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Behavioral Intervention Program for Children With Autism Spectrum Disorder Undergoing Epilepsy Evaluation: Increasing Phase 1 Monitoring Rates

Behavioral Intervention Program for Children With Autism Spectrum Disorder Undergoing Epilepsy Evaluation: Increasing Phase 1 Monitoring Rates 1024 683 JoAnna Pendergrass, DVM

A behavioral intervention program that started as a quality improvement project evolved to a new standard of care — increasing access and compliance with Phase 1 monitoring for children with intractable epilepsy and autism spectrum disorder.

A recent study led by Mary Wojnaroski, PhD, a psychologist at Nationwide Children’s Hospital, reported a sustained, multi-year increase in enrollment of children with autism spectrum disorder (ASD) in a behavioral intervention program, enabling all enrolled children to complete the Phase 1 epilepsy evaluation successfully.

Phase 1 evaluation helps determine treatment options for children with intractable epilepsy but requires an extended hospital stay and intensive monitoring.

“The long hospital stay is stressful for these children, along with having to tolerate several dozen EEG leads on their heads,” says Nancy Auer, a family nurse practitioner (FNP) in Nationwide Children’s Epilepsy Center.

Limited research exists on behavioral programs to prepare pediatric patients for Phase 1 evaluation. The current study’s successes have led the program to become a standard of care at Nationwide Children’s, Auer emphasizes.

“Children with ASD can have difficulty in a hospital setting, making it hard for them to complete medical procedures. But we shouldn’t underestimate them! With preparation and support, they can be successful and receive the medical care they need,” Dr. Wojnaroski adds.

Study results were published in Neurology: Clinical Practice.

 Dr. Wojnaroski and Ms. Auer assembled a multidisciplinary team of providers to identify barriers to completing Phase 1 monitoring and behavioral interventions to address them.

The team, which included psychologists Hannah Barton, PhD, BCBA, and Morgan Wright, PhD, BCBA, both in the Child Development Center, developed four interventions:

  • Prepare families for Phase 1 admission, starting with an intake call and preferences questionnaire
  • Provide information about patients’ needs to the inpatient team 3 to 5 days before Phase 1 admission
  • Educate and train the inpatient team about children with ASD
  • Execute behavioral interventions with patients and their families

During the intake call, parents answered questions about their child’s communication and developmental functioning and the level of challenging behavior. Using these responses, along with previous experience with EEG and parent input about which specific parts of the Phase 1 process would be challenging for their child, the research team assigned the children to one of three tiers, with Tier 3 requiring the most extensive behavioral interventions.

Parental involvement was integral to the program, which was implemented in January 2020.

“Parents provided the necessary assistance with, for example, offering at-home opportunities for children to get acclimated to the EEG leads,” Auer says.

Eighty-one patients with ASD were referred for Phase 1 evaluation between January 2020 and September 2024, and 68 of these enrolled in the intervention program (83.9%). This increase has been sustained for 5 years.

“These results demonstrate that the intervention program was feasible,” says Dr. Wojnaroski.

Although children with ASD can face challenges in a medical setting, Auer believes that “Children with ASD should be given the same opportunity to receive curative or palliative treatment for their epilepsy.”

Future research plans include examining parents’ perspectives on their children’s behavior in the hospital during Phase 1 monitoring and surveying other large children’s hospitals to identify the services provided to patients with ASD.

“Sometimes, it takes a single patient to spark interest in addressing a problem,” Auer notes, referring to a patient with ASD, cognitive delays and treatment-resistant epilepsy who was able to complete Phase 1 evaluation and receive curative epilepsy surgery after undergoing multidisciplinary behavioral treatment at Nationwide Children’s.

“We do what we do because we want to serve our patients,” Auer concludes.

 

Reference:

Wojnaroski M, Newton E, Patel AD, Bode RS, Gajarski R, Gallup J, Rose ME, Abdel-Rasoul M, Auer N. Multidisciplinary intervention for children with epilepsy and autism spectrum disorder admitted for EEG. Neurology: Clinical Practice. 2025;15(6):e200543.

Image Credit: Adobe Stock

About the author

JoAnna Pendergrass

JoAnna Pendergrass, DVM, is a veterinarian and freelance medical writer in Atlanta, GA. She received her veterinary degree from the Virginia-Maryland College of Veterinary Medicine and completed a 2-year postdoctoral research fellowship at Emory University’s Yerkes Primate Research Center before beginning her career as a medical writer.

As a freelance medical writer, Dr. Pendergrass focuses on pet owner education and health journalism. She is a member of the American Medical Writers Association and has served as secretary and president of AMWA’s Southeast chapter.

In her spare time, Dr. Pendergrass enjoys baking, running, and playing the viola in a local community orchestra.

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